Multiple sclerosis  is My Living Hell

DisabilityAwareness

All posts tagged DisabilityAwareness by Multiple sclerosis is My Living Hell
  • Posted on

    It’s funny, isn’t it? You’re in a room with one other person. Just the two of you. You speak. Your mouth moves. Actual words come out. But somehow… nothing lands. It's like you're a ghost, a passing breeze, or worse — background noise to someone else's ego monologue.

    Welcome to my reality: Selective bloody hearing.

    Let me paint the scene. You're fighting off a brutal illness, spasms hit like a freight train, your brain fogs up like a broken kettle left out in the English drizzle, and then comes the cherry on top — people don’t listen. Not can’t. Won’t. They avert their eyes, mumble condescending clichés, or — the fan favourite — promise they’ll “call you soon.” (Spoiler: they won’t.)

    Is it the wheelchair? The drooping face? The occasional dribble? Or do they just prefer their disabled friends silent, motionless, and conveniently non-existent?

    Maybe They’re Just Uncomfortable? Oh yes. Heaven forbid they feel awkward while you’re being eaten alive by something terminal and nightmarish.

    I started calling them out. Can you imagine the chaos? Apparently, honesty from the terminally ill is too real. It makes dinner parties awkward. And honestly, I’m well past the point of caring. If I’m going to be ignored, I might as well scream in Black Sabbath and let Ozzy do the talking.

    Paranoid? Nah. At first, I thought maybe it was just me. A bad day. A misread signal. But no. There’s a pattern. The looks. The empty promises. The slow fade-outs. The way friends evaporate like cheap aftershave. You become a "thing," a problem they can't fix and don't want to look at. I didn’t ask to be a medical freakshow — but here I am, feeling like the last carnie in a ghost-town circus.

    It's Raining, I'm Buzzing Brain fog is a beast. Been digging into DNA research (who was I before this monster arrived?), but my head’s a bag of wet socks lately. Tingling lips. Numb tongue. Probably allergic to the air again. And that damn straw — it always goes missing, like some household Bermuda Triangle.

    Wrestling Is My Religion Say what you want — yes, it’s “fake” — but pro wrestling is realer than most people I know. There’s truth in the ring. Pain. Theatre. Keyfabe. Art. The ghosts of the squared circle still dance under the spotlights in my head. And let’s be honest, “Real life is fake. Wrestling is real.” That’s my gospel. That’s truth.

    📢 Follow me on X/Twitter: 💀 “If you like your humour dark and your truth darker, come hang out with a chronically ill goblin on a ranting mission of mayhem. Pro wrestling, spirituality, weirdness,disability, sarcasm, and survival served raw.”

    🧠 @GoblinBloggerUK 📍 Because somebody's got to say it...

                  “REALITY IS FAKE. WRESTLING IS REAL.”
                                — @GoblinBloggerUK
    

    looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky ... many thanks sick@mylivinghell.co.uk

             “The views in this post are based on my personal  
                experience. I do not intend harm, only honesty.”  
    
              “By ink and breath and sacred rage, I write.
                       By storm and silence, I survive.”
    

    enter image description here

  • Posted on

    So here we are, diving headfirst into the weirdness that is my life — or what’s left of it after being slowly, methodically gnawed apart by progressive multiple sclerosis. Charming, right?

    I knew things weren’t quite right from the start. I wasn’t imagining it, pretending, or trying to skip PE. I was nine years old with legs like jelly and nerves that fired like broken Christmas lights. I knew something was off. My body wasn’t working properly. It never has. And it’s been downhill ever since — no brakes, no map, no helpful roadside breakdown service.

    Spoiler alert: I have MS. Progressive MS. The slow-burn, never-look-back, “enjoy the ride, it only gets worse” variety. And I’ve been fighting it for over 50 years — most of that in silence. Unheard. Unseen. Ignored. Dismissed. “Attention-seeking.” “Hysterical.” You know the drill.

    Back then, there was no MRI magic or lumbar puncture fun day out. No one believed me. No one wanted to. The doctors — ah, bless them — thought I was putting it on. For the drama, I suppose. Because pretending to lose control of your limbs is all the rage when you're a kid trying to survive school.

    Forty years. That’s how long it took them to finally notice. Forty. Can you even fathom that? I had all the textbook symptoms, but apparently, I was just making a lifestyle choice — you know, becoming progressively disabled for the vibes.

    Eventually, they finally dragged me into hospital for all the fancy tests that proved, lo and behold: I wasn’t a liar, I wasn’t mad — I was just slowly falling apart from something called MS. Ta-dah. Gold star. Thanks for coming.

    And honestly? It was a relief. Not the diagnosis — that sucked. But the proof. The closure. The validation. After decades of being told it was in my head, turns out it was in my spinal cord all along. Go figure.

    But here’s the twist — I didn’t just survive that hell. Somewhere along the line, I changed. Call it spiritual, call it delusional, I don’t really care — I had what you might call a cosmic chat with the universe. Serapis Bey (look him up if you like mystics with style) paid me a visit, and something clicked. I shifted. I transformed. Something deep happened.

    I’m not the person I used to be. Not even close. And people who knew me before can’t believe the person standing before them now. It’s like I underwent a total soul renovation with added glitter and spiritual scaffolding.

    This world isn’t built for people like me — the weird, the ill, the eccentric, the inconvenient. If you’re different, you get ignored. Gaslit. Written off. But I’m still here. And I’ve got a voice, even if some days I barely have the strength to lift a cup of tea.

    So here’s my truth: I’m strange. I’m spiritual. I’m sarcastic. I’m raging at the system but laughing through the pain. I have MS — but I’m still me.

    To the others out there, like me — the unheard, the “difficult cases,” the ones who’ve been shoved into the corner because they didn’t tick the easy boxes: you’re not alone.

    Don’t let this world break you. Let it sharpen you.

    Rebuild. Reclaim. Be weird. Be you.

    And if you’re ever in the dark, just remember — some of us are out here, lighting the way with rage, humour, and a whole lot of “f*** you” to the system that failed us.

    🧠💥 40 Years Misdiagnosed. Still Here. Still Loud. They told me it was in my head. It was — just also in my spine, my nerves, and every inch of my being. This is the story of living with undiagnosed progressive MS for over 40 years. Ignored. Dismissed. Unheard. And yet — I never gave up. I changed. Spiritually, physically, mentally. I became something else. This one’s for the misfits, the chronically ill, the eccentric warriors who’ve been told to sit down and shut up. We’re not going anywhere.

    🕊️ Who is Serapis Bey? Serapis Bey is known as an Ascended Master — a spiritual teacher who once walked the Earth and has since transcended to guide others on their soul’s evolution. Often associated with the energy of discipline, transformation, and spiritual rebirth, he’s considered the keeper of the White Ray of Ascension.

    In short? He’s the no-nonsense cosmic coach who shows up when your life’s gone full chaos and it’s time to rise from the ashes — stronger, clearer, and more you than ever.

    He helps guide those going through massive life shifts, especially when it feels like you're being spiritually remade from the inside out. Think: divine tough love with soul-level purpose.

    sick@mylivinghell.co.uk

           “The views in this post are based on my personal  
              experience. I do not intend harm, only honesty.”